Monday, August 19, 2013

It started when Brian was a baby. He was six months old when we decided to start trying for another child. We still didn't know exactly what we were dealing with with Gavin (we never did find that out!), but we wanted to be sure that Brian had another sibling. My mind kept racing towards the future - the day that Ed and I were no longer here. I figured that Gavin would likely need care his entire life... and I didn't want Brian to feel alone in that. And I also worried that Brian would feel lonely - if Gavin never talked or walked. Boy, did we try for that other baby. The old fashioned way... pills... injections... we even made an attempt with donor eggs. Along the way we lost Darcy and many other babies who never made it to this Earth.

Giving up and moving on was a gut wrenching decision. But when I knew it was time to stop - I knew. And I felt pretty comfortable with that. I was proud to finally be strong enough to walk away and wrote about it in one of my personal favorite posts called "Reclaiming Me."

But I still had those pangs - mainly when I looked at Brian. As he progressed and Gavin trailed behind... as they started playing with completely different types of toys... I would worry. About Brian.

But now Gavin is dead.

And I was so, so wrong.

As I lay in bed each night with Brian and we go over Gavin's "death day" in detail before I turn out the lights.

As I sit on the swings with him and, on his request, push the invisible "angel Gavin" in his bucket swing.

As he says to me, "I miss Gavin's laugh the most." (So do I, buddy. So do I. Watch this little video and you will, too.)

As I watch him sleep in Gavin's bed.

As I well up with tears when he says, "Mama, remember when me and Gavin..." and recounts so many memories he has having fun with his big brother.

As I look in the rear view mirror when he says, "Mama - I miss Gavin sitting next to me. It's lonely back here."

As I hear him talk to Hope in my belly, which he has started to do, and he says "You have two big brothers - me and Gavin. Gavin died, but that's okay. I'll be your big brother and I'll tell you all about Gavin later."

As I watch... and listen... I realize.

I completely and totally... 100%... underestimated their relationship. I thought I got it. I knew they loved each other. I still thought another sibling would make things so much better.

I can see Brian growing up to be a Champion for peers who have differences. It is so beautiful to see children who stick up to the bullies and who make the effort to include those who need to be included. Kate you are doing a great job in nurturing that gift that Brian has because he gets that from you!

On another note, my first daughter was born on April 14 and my second daughter was born on September 29.

This really hit me hard. Beauty and sorrow all in one once again. I am struggling with the choice to have a sibling for Evan, and I know it will be the right choice, but I need to get past all the what if's and just take the leap....

Aww, beautiful and insightful. Thank you for sharing your story and the pictures in this post. Gavin was very lucky to have such an amazing little brother and it sounds and though he will be a phenomenal older brother. I have a quote on my kitchen wall that you might like to hear- "To hear the laughter of a child, to wake up next to the love of your life, to know that God placed these angels on earth for you...you are blessed." I hope it brings a smile to your heart. Gavin was a blessed boy and now he is experiencing the ultimate reward of Heaven, taking care of Darcy and your other babies. They needed him more, I suppose.

"As I hear him talk to Hope in my belly, which he has started to do, and he says "You have two big brothers - me and Gavin. Gavin died, but that's okay. I'll be your big brother and I'll tell you all about Gavin later."

Maybe it's not that you got it oh, so wrong, but that Brian and you--both--got it oh, so right, Kate. Some of this unconditional love Brian is showing is the innocence of youth, and yet, so much more of it is coming from your's and Ed's teachings, the way in which you live out each and every day...

How lucky Hope is to have such a beautiful family. How lucky all of you are to have such a special gift in Hope...

LOTS of tears! Beautiful. Brian is SUCH a special boy. He is a MUCH better person because Gavin was part of his life. He has learned to love and empathize and CARE. One day he will marry one LUCKY girl and parent some amazing children and his wife will thank Gavin for that.

I'm a sib, like Brian, and I find many people underestimate the connection us sibs feel towards our siblings. It's unconditional love. But, I agree with Annah. Brian is showing unconditional love, and with the lessons both you and Ed, as well as Gavin have taught him...he's going to make a supercalafragelisticexpalidocious big brother :)

Tears are streaming down my cheeks....isn't it wonderful the lessons you learn from your children? It is beautiful the amazing life lessons that Gavin was able to teach Brian in such a short time. I'll take this one with me for a long time. Ann W.

Thank you for sharing your family's incredible journey! This one hit home for me. I'm a 17 year old triplet and surviving 25 week preemie. My sister Rachel had severe CP and died in October of 2005, when we were 9 years old. My mom, too, has expressed similar worries. That my other sister and I missed out on "normal" things, as simple as not being able to ride in the shopping cart all the time, because one of us would push Rachel. Things like not being able to play outside when there were air quality warning days because of Rachel's respiratory issues. But my other sister and I both immediately rebuke my mom when she says things like that...We never felt like we missed out. I have amazing memories of playing racecar with Rachel in her wheelchair, pushing her up and down the school hallway as fast as I could...of making friends without a thought of whether they were able to walk or talk...of being in awe at the trust my dad put in me in the swimming pool when we were 8 and he handed me Rachel. I held her under her arms and drug her slowly through the water screaming "Emily and Rachel half-underwater express!" and she laughed and laughed. When I was 2, I imitated the physical therapist by balancing my doll on top of a soccer ball. I never missed out and neither did Brian. He's such a sweet, insightful little boy. I pray he can treasure and retain his memories of Gavin the way I do with my memories of Rachel. Love from Indiana, Emily

I missed a few of your recent posts, but they always touch a part of me deep down because of some similarities to my own experiences and feelings. This morning I scrolled back a bit to catch up (tissues in hand) and was particularly touched by this one. We've been holding off on trying for another child because sometimes it doesn't seem like it would be fair to take time & attention away from my 19 month old son with special needs, or vice versa, but I so much want him to have a "big brother". People laugh when I say that and correct me because they don't truly understand my son's condition and think that obviously you can't have a younger "big" brother. And maybe that's not the best terminology for me to use, but your post illustrated that exact brotherly bond that I desire for my son. These things are in God's hands though, so I'll have to leave the what, where, when, how up to Him, but my yearning for a sibling for my son has been reignited. Thank you:)

This was a very emotional story today. Our family too has lost a child that we only got to hold for a day. Her big sister talks of her often. We have since had a very healthy little boy, his big sister shows him the picture book of his sister and tells him how she is in heaven. We are approaching what would be her second birthday. I love the way you are honoring Gavin's birthday. Even though this brings tears to my eyes I love how innocent and straight forward the siblings of these ectra special children are.

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

Want to know more? Click on each link under the pictures at the top of the page to read our stories...

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can write a check made out to CCIU and mail it to: Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!